Abstract [en]

OBJECTIVE: Traumatic spinal cord injury is typically a devastating event, leading to permanent physical disability. Despite the severity of the condition, many persons with traumatic spinal cord injury manage to lead both active and independent lives. The aim of this study was to investigate the experience of health and wellbeing of persons living with a traumatic spinal cord injury for at least 20 years. Design and methods: A qualitative design was used. Data was analysed using a phenomenological-hermeneutical method. Rich narratives were obtained from 14 persons with paraplegia due to traumatic spinal cord injury sustained at least 20 years ago. RESULTS: The key finding was that health and wellbeing were attained when persons were able to perceive themselves as being “normal” in everyday relationships and circumstances. The normalization process involved learning to negotiate and/or prevent potentially embarrassing situations by acting in a “parallel world”, covertly “behind the scenes”. CONCLUSION: The subjective experience of wellbeing and health after traumatic spinal cord injury depends upon the ability to prevent or resolve potentially embarrassing situations without this being noticed by others. Performing this work “behind the scenes”, enables persons with traumatic spinal cord injury to interact smoothly with others and thereby be perceived as normal, despite substantial disability.